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I had my quarterly appointment for the study yesterday and things went well, though I only dropped to a 1.0 on the EDSS scale. I was hoping for 0.0, but I guess that might be a tad hopeful. Apparently I’m missing some reflex actions in my left foot, and according to the NP it’s unlikely that I’ll ever get them back. Not a big deal as it’s not noticeable unless I get frustrated, tired, or pissed off. Then I develop a slight limp with my left leg which will go away if I sit and rest for a bit and calm down. All in all, a very good check up other than my trip to the scale….. still have some excess flab hanging around. I’m not too worried about it as my wife and I have a couple of hiking trips planned this summer…. one to the Badlands and Black Hills in South Dakota and another to the Vermont/ New Hampshire area. Or to wherever the wind happens to blow us. Let the training commence

Another bit of good news I picked up is that Graves disease (a major concern with the people putting on the study) hasn’t developed in any of the participants worldwide nor have there been any serious infections noted aside from the case of listeria (sp?) that I mentioned in an earlier post. Those aren’t “official” results or anything, just sort of “the word on the street” among the nurses and neuros.

Raven- I’m curious if you had to take the standard battery of tests that they run us through on CAMMS223. The incredible fading eye chart, the slippery peg test, and the hideous math addition CD. I’m not at all sorry that I only have to do that every three months…. I think that part is worse than getting my blood drawn.

Anyhoo, guess I ought to get going. We had some heavy rains today and I have to get to work mopping up the rather large puddles that have sprung up in my basement. And the forcast is calling for snow tomorrow. Was it really 80 degrees here a couple of days ago?!? Gotta love Michigan springs.

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Good news about the exam. What's a few reflex actions here and there compared with what MS can and does do to so many.

I had to do a neurological exam, reflexes, sight test etc. But not the slippery peg test??? and certainly no maths exam!

I think camms224 is far less controlled than 223. I didn't even get an MRI before starting the treatment. I was actually quite disappointed at that. I would have liked to be able to compare a new MRI with the one that gave me my diagnosis, and in the future to be able to see the effects of the treatment on me.

At the moment the spasticity in my legs is definitely improved over my pre-treatment condition. Now if only the bladder problems would go away I'll be a very happy bunny indeed

Robin

Do not go gentle into that good night. Rage, rage against the dying of the light.

Well if my experience is anything to go by, happy bunnydom will be your state in the future as the ever popular bladder problems were among my laundry list of symptoms. Granted, my symptoms may have gone away on their own without the Campath treatment, but considering my condition before treatment I find that scenario rather unlikely.

I am surprised that you didn’t get an MRI. One of the conditions that needed to be met before acceptance into CAMMS223 was that you had to have at least one active lesion…. unfortunately a condition I met and surpassed with ease. I had the option to sign up to have an MRI done every month for the first six months after the initial treatment and I jumped on it. I’m not a big fan of climbing in the tube but it was well worth it. After my 4th MRI all lesions had become inactive, and after the 6th most had shrunk in size with some of the smaller ones disappearing altogether.

We also have to take four tests (along with the standard neurological exam) every three months. The tests are to measure our increase/ decrease relative to previous scores. These include:

The speed walk- we’re timed as to how quickly we can cover a set distance, roughly 10 yards.

The incredible fading eye chart- weird eye chart where instead of getting
smaller as you move down the chart, the letters get fainter, and rather than black letters on a white background, they’re on a tan background with random black splotches sprinkled throughout.

The peg test- you have to grab plastic pegs one at a time out of a small plastic bowl and place them in a small grid of holes then remove them one at a time and put them back in the bowl. The pegs are very smooth and feel slippery to me. And we won’t talk about the time that I was trying to pick up the speed a bit and managed to knock most to the pegs out of the bowl and all over the table. What can I say? Grace and dexterity have never been two of my better attributes. I guess my coaches back in school had good reasons for making me an offensive lineman.

The hideous “math test”- basically the nurse puts in a tape and a narrator
begins to read off numbers. Take the sequence 5…7…3…4. Basically you have to add the spoken number to the previous number in the sequence. The number 5 is spoken, then 7. You add 5 and 7 in your head and say 12 out loud. Then the 3 is spoken by the narrator and you have to add that to the 7 in your head and say 10 out loud. Then comes the 4 and you have to add the 3 to it ad say 7 out loud. It’s all very basic grade school addition, but there are only two or three seconds between each number on the tape, and trying to remember the last number in the sequence while doing the addition in your head and speaking the sum out loud can get rather confusing. The whole test lasts only two or three minutes, but it seems like an eternity. As of yet only one person at my clinic has made it through the entire sequence with no errors…. at my last check up I made six mistakes.

I gather that the fact that I would have done poorly on this test
prior to MS is of no matter to the study sponsors, just the fact that I don't get progressivly worse at it is good enough. It does get frustrating though.

Trust me Raven, you're not missing anything by not being given the tests.
And I hope that in the not to distant future you'll be able to head out into public and not scour wherever you are for the nearest restroom just in case

Thanks for the additional information on your progress. Its good to see that in additon to your improvements on the EDSS (disability scales) improvements have also been seen in your MRIs. I remember reading of another patient on this trial who said that an MRI after treatment (can't recall how long after) showed that she had no lesions. I suppose one has to wonder whether if disability dropped to 0 on the EDSS and all lesions dissapeared, whether someone would still have MS??

At your check-up were you told how many more infusions you would need - will it be every year?

My other question relates to fatigue - not sure if you experienced this symptom? If you did, have you noticed any improvements. The sorts of places you intend to hike certainly give the impression that you have plenty of energy.

Sorry for all the questions, but the sorts of results you have experienced are impresive.

The NP told me of one of the women on the study who had the same thing happen regarding lesions and MRI. She went in for an MRI and according to the radiologist who read them, she had zero lesions and if not for the fact that he already knew that she had MS, he never would have been able to tell it from the MRI results. Unfortunately she still had MS and if she got overheated or tired some minor symptoms would come “out of the closet” so to speak. Certainly not a relapse, but just sort of the body’s way of saying “oh yeah, by the way, YOU HAVE MS!! SIT DOWN AND TAKE A BREAK!!” Same sort of thing happens to me occasionally, but a ten or fifteen minute rest break and I’m good to go.

As far as the number of infusions I’ll get, that’s sort of up in the air for the time being. I know I’ll get a third dose at my two year anniversary this October, but what happens beyond that is up to Dr. Coles and his team. That was one of my major concerns about signing on for the study. It’s three years long, but what if at the end of the three years I’m doing quite well (and I guess the “quite well” is a bit of an understatement for how I’m doing at the moment), do they just say “thanks for the data, so long and have a nice life” and send me out into the world?

But there is the possibility of a rollover study for those of us participating in Phase II. I know that they’re gearing up for Phase III and would like to start recruiting for it late summer/ early autumn of this year (I believe that’s the timeline, but don’t quote me on it as it’s rumor only at this point). But considering that sometime during Phase III they would perhaps start approaching various government agencies about approval for use as a drug in the general population, I would gather that they would like to have as much long term data as possible, so continuing to have us Phase II folks still being studied would be rather advantageous so perhaps they will continue to monitor us for blood counts (CD-4, CD-8, CD-19 and whatnot) and dose us again if our bloodwork merits it. It’s all speculation on my part at this point, but I do have hopes of a rollover.

As to energy levels and fatigue, mine seem to be limited more by my age (40 is less than a year away ) and physical conditioning than anything to do with MS. MS certainly drained the levels a year and a half ago, but they’ve returned to their pre MS levels for the most part, and will hopefully increase with more workouts, which will certainly be needed if I plan to survive galavanting around the badlands. But at the end of last summer 8 or 9 miles of walking and hiking in one day was possible (though tiring) and I’m in better shape now than I was then.

Any other questions, please feel free to let me know. Much to my wife’s chagrin (and the NP’s amusement) I have a habit of running (and typing) off at the mouth

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